Ars Vivendi Journal No.1 (August 2011): 52-55

Living with an Intractable Disease:
Technology and “Technical Peer Support” for an ALS
PatientTomoo HIDAKA**Graduate School of Letters, Ritsumeikan University, Japan Society for the Promotion of Science Research
Fellow

1. Introduction
Amyotrophic lateral sclerosis (ALS), also referred to as Lou Gehrig’s disease in the UnitedStates, is a progressive, incurable motor neuron disease. It has afflicted many famous figures,including theoretical physicist and cosmologist Dr. Stephen William Hawking. Patients
gradually lose body function because of the degeneration of motor neurons. With time, patientsencounter difficulty in speaking and eventually require a respirator after the loss of spontaneous
breathing. Nonetheless, there are differences in the progress of the disease, and this can be a
problematic issue. On average, patients begin using a respirator three years after the initialdiagnosis, although some patients require it after only a year. However, their consciousness,intelligence, and perception are nonetheless unimpaired. These patients therefore need anotherway to communicate in order to live within an unmoving body.
Techniques and technologies for effective communication have been developed for thepeople who face difficulties in communication, including ALS. These are often included inassistive technology. There are many kinds of support tools such as the word plate and nurse call.
It is important for patients not only to respond to a life-threatening condition but to also share
their experience and conduct advocacy-related work on behalf of other ALS patients. Somepatients have communicative aids to write a book or report their experience to the generalpublic as a form of patient advocacy work. The communicative capacity of the patients can bedeveloped using these technologies.
Nonetheless, there are problems with the continuous use of assistive technology. Oneproblem is the lack of skillful supporters who are knowledgeable about both the disease and therelated technology. Research specifically shows that one-third of assistive technology isabandoned within three months because of the lack of effective patient support (Lasker andBedrosian, 2000). On the other hand, in a few exceptional cases, patients have been able tocontinuously use assistive technology with the help of a supporter.
In this study, I focused on an example that includes two individuals. The first is Mr.
Wanaka, an ALS patient known for his active involvement in patient advocacy activities; at52

Ars Vivendi Journal No.1 (August 2011): 52-55

home, he uses his cheek for communication and receives 24-hour care. The second is Mr.
Hisazumi, an ALS patient supporting other patients’ communication through his knowledge ofinformation technology.
This background led to our basic research question: “How does Mr. Wanaka live in thismanner?” Therefore, the following two issues should be examined. The first is clarifying theactual condition of the home care Mr. Wanaka receives. The second is an understanding of theunique technology created by Mr. Wanaka and Mr. Hisazumi on the basis of the particularity of
the home, including differences in the patients’ home themselves and differences in the effective
support received.

2. Method
The participants were directly observed at Mr. Wanaka’s home 13 times in a month
between August 4, 2007, and January 26, 2009. The involved people were Mr. Wanaka, othermembers of the Wanaka family, his caregiver, Mr. Hisazumi, and Mr. Hisazumi’s caregiver.
Data were collected using focused question interviews and observations. Dr. Shodo Mizuki, aco-researcher, was included in this fieldwork.

3. Result and Discussion
3-1. Overview of Mr. Wanaka’s Home Care
The results are summarized in six scenes
depicted in Figures 1–4.
Figure 1 shows Mr. Wanaka’s bed. Thebasic structure of Mr. Wanaka’s house iscommon in Japan, although there are some
unfamiliar aspects. Computers (Mac and PC)
and communication aids were placed in frontof his bed. A respirator was also placed at theback of the bed.
Figure 2 shows a conversation between
Mr. Wanaka, his wife (Ikumi), his caregiver(Ms. Sugimoto), and Dr. Mizuki[1]. Here, Mr.
Wanaka uses communication aids to speakwith others, and sometimes, winks to answer“Yes”/“No” questions. This figure also depicts
Ms. Sugimoto adjusting the position of Mr.
Wanaka’s left hand (into which one of theinterface tools was placed). She specificallyasked “Is this the best position for you?,” andhe answered the question with a wink,

Fig.1: Mr.Wanaka on his bed

Fig.2: A conversation between Mr. Wanaka andothers, including Ikumi, Ms. Sugimoto, and Dr.

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Ars Vivendi Journal No.1 (August 2011): 52-55

including cheek movements. The basic signs
for “Yes”/“No” questions were previously
decided between Mr. Wanaka and his
caregivers, including Ms. Sugimoto. He does
not always need to use computers forcommunication and can respond quickly to“Yes”/“No” questions.
Figure 3 shows the cheek interface
Fig.3: Mr. Wanaka’s cheek interface created bycreated by Mr. Hisazumi. It was made from aMr. Hisazumicombination of easy-to-find, inexpensive
everyday materials, through the dialogue
between Mr. Wanaka and Mr. Hisazumi(Fig.3). Thus, the materials used for theinterface were not uncommon. Here, the two
people have a dialogue about the usability of
the interface and how it can be made better.
Making better interfaces is not an easy task
because the patient’s sensations are difficult
to measure.
Figure 4 depicts communication withother patients via the Internet throughinstant messenger. This method is also used
Fig.4: Computer displays with instant messengerto attend remote meetings and lectures. Mr.
Wanaka uses communication aids, aMacintosh, and a PC, through the interface. For example, he often exchanges information
regarding home care techniques with other patients. He also uses this telecommunication
system to attend remote meetings and lectures for patient advocacy. In this way, he remains
active even though he is at home.
3-2. Characteristics of the “Technical Peer Supporter”
These results imply that Mr. Hisazumi has played an important role in providing andmaintaining home care for Mr. Wanaka, especially through his technical support activities. The
following three points effectively summarize the characteristics of this “technical peersupporter.”First, the role of the “technical peer supporter” is not simply to be a “peer” but also a creatorof customized technology. Second, there was also a process of perfection. In the present case,there was a specific dialogue between Mr. Wanaka and Mr. Hisazumi, who became agents oftechnology creation and use through the sharing of their experiences. Third, the destination of
the support, referred to as “addressivity” (Bakhtin, 1986) was also notable. They knew who theuser and the creator were, maintaining a dialogue that enabled Mr. Hisazumi’s support tocontinue.
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Ars Vivendi Journal No.1 (August 2011): 52-55

On the basis of these discussions, Mr. Hisazumi may perhaps be best described as a“reflective practitioner” (Schon, 1983) with local knowledge. He improves the home careenvironment with the customization of everyday materials and constantly searches for thebetter solution.

4. Conclusion
In conclusion, technical peer support is based on “addressivity,” which makes for an
on-going interactive relationship that can create the best technology for each individual. It
contrasts strongly with modern bulk production methods. Mr. Hisazumi’s technology has aclear user and a creator, and it provides support suitable for each individual patient. Mr.
Hisazumi considers his activity a key source of motivation in life. Thus, understanding Mr.
Hisazumi’s perspective is an interesting issue.
On the other hand, it is also important to mention that the relationship between Mr.
Wanaka and Mr. Hisazumi is based on the network and activities of the patients’ group. There
are historical and relational backgrounds related to this aspect. The computers and respirators
were also provided through social and financial support systems of the society.
If one applies this case to another patient, one needs to study these backgrounds. This may
still seem difficult to apply because of its particularity. However, it is more important that
communication support is realized in the field. This will act as a good starting point for studying
technology, support activities, and health care.
[1] In this study we used the autonyms of the involved people, to describe the patient’s life as actual
person’s one. It was a requirement from them, and all of photographs and autonyms in this study havebeen allowed to use through the full consultation with them.

5. References
Bakhtin, M. M. (1986). Speech genres and other late essays. C. Emerson & M. Holquist, (Eds.)
Austin, TX: University of Texas Press.
Lasker, J. P., & Bedrosian, J. L. (2000) Acceptance of AAC by adults with acquired disorders.
Beukelman, D. R., Yorkston, K. M., & Reichle, J. (Eds.) Augmentative and AlternativeCommunication for adults with acquired neurologic disorders. Baltimore: Paul H. Brookes
Publishing. 107-136.
Schön, D. A. (1983). The reflective practitioner: How professionals think in action. New York:
Basic books.

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